Yesterday I had the incredible honor of speaking alongside nineteen brilliant presenters at the very first TEDxUWMilwaukee conference, sponsored by (the generous, engaged, and incredibly supportive folks at) Northwestern Mutual. I sit here, just hours from the event, still buzzing with the spellbound feeling that comes with being a part of something really extraordinary.
Above all else, my heart is full of immense gratitude for the opportunity to be a part of the experience we shared as we journeyed through the day together. While the world scurried around us, we entered a small campus theater as strangers, loosely connected in our desire for new ideas and inspiration. The palpable excitement shared by everyone in the theater, the organizers, speakers, sponsors, volunteers and attendees, was matched with a warmth and conviviality that we could feel in the very first moment that kicked off the day, and it made me absolutely giddy. (Me. Giddy. Yeah, let that one sink in a minute. Gross. I know. Let’s move on.)
Throughout the day, I had the chance to talk to many folks in audience, and they all shared the same sentiment, “Every single speaker has been incredible!” I think that we all approach something like a day long conference expecting (hoping) to hear some really great talks, but also recognizing that with a group of twenty different speakers, it’s likely that some of the topics fall outside our area of interests, and/or we might not connect with a particular speaker. It happens at every event, it’s totally normal, but OVER and OVER again, people were sharing their excitement about ALL of the talks. One particular comment I heard quite a bit was that the entire line up was strong, and how impressed and excited folks were to discover that. When we emerged for that first intermission, people were beaming. It was fucking glorious.
Obviously, none of that happened by chance. The event organizers have been working for nearly a year to curate and produce an awesome TEDx event. They worked with all of us (speakers) for months, helping us shape our ideas, improve our approach, and helping us translate the passion we feel for the ideas we want to share into a talk that resonates. They brought us together in various smaller groups throughout the summer to give us the chance to help each other through the development of our talks. These curation meetings were such a huge part of what made this whole experience so special for me. On the evening of my first curation meeting, I showed up to join this diverse group of really smart people who are doing some really incredible things, and I felt pretty intimidated at first. But this group, the speakers and the organizers, weren’t just brilliant thinkers. They were humble and kind, and I think maybe we all shared in a little bit of intimidation at first. Of course, it was short lived, and I left that first meeting feeling extremely fortunate to find myself on a team of really excellent human beings.
Working as a group improved and enriched my talk to something I couldn’t have done on my own, and exchanging criticism and offering suggestions was easy to do with this group because every single one of us wanted everyone else to succeed. For my part, I found myself also wanting to give a really great talk, not just for myself, but because I wanted my contribution to convey the respect I have for this group, and I wanted my talk to be a reflection of the amount of work that everyone involved put into this conference.
For me, yesterday was an incredibly beautiful and humbling experience. The number of people who so generously shared their own stories with me after my talk is something that will stay with me always.
The faces of the people who approached me to share a hug, a laugh, a couple rogue tears, or a simple “Thank you for sharing” are seared in my heart, which is perfect, because while my brain can’t always be trusted, my heart will never forget.
Stay tuned for follow ups on re-caps, photos, and the videos! This shit’s gonna be bananas. xoxo
I’m considering adding some additional hardware to my previously upgraded brain. Consideration for any additional parts is hard for me, no matter how big or small. This one’s called a vagus nerve stimulator. No brain surgery would be required this time (yaya!), just a simple procedure to implant a small device into my chest and feed the wiring up to my neck to attach its leads to the vagus nerve. The device stimulates the vagus nerve and can potentially halt some seizures in their tracks or at least make them shorter in duration and severity. It isn’t a cure for my seizures, but combined with the medications I take, it may improve my situation. As with anything, it comes with risks, and having gone through my fair share of medical procedures and various treatments with varying levels of success, I need to take the time for careful consideration of all potential outcomes. Aside from the fact that I have intractable or “refractory” Epilepsy (Epilepsy that does not respond to medication therapy), I’m considering this option because the damage from a specific type of seizure activity I have is now clearly affecting my cognitive abilities. I’m getting “dumber”. (Jokes are welcome, but only if they are really, really good. I’m still an asshole at heart, and it’s still potentially funny. Sometimes. Bring your A-game, fuckers.)One of my greatest fears is slowly becoming reality. I don’t know how to process this, yet. I don’t know how to glean the positive from this. I don’t know how to turn this one on its head and shape it into something ok. All suggestions, other than feeling sorry for myself, are welcome.
I’ve taken many aspects of this in stride, because I’m fucking awesome, of course. But this one is the hardest. It’s getting harder to write. I’ve always felt that as long as I could still write, could still tell stories, that the best of me remained intact. My ability to write, and do it well, serves as a personal benchmark for holding on to my brain as it functions as Sara. If I can still tell stories, I’m still here.
Perhaps pieces of me are beginning to depart. Perhaps, if I’m being honest with myself, pieces of me are already gone. (Yes, Sara. They are.) At what point do I lose me, Sara, the Sara I identify with, the Sara that has always been? Will there be a point when I don’t even notice these changes at all? It’s kind of a giant mindfuck, to say the least. Tears have been shed, sleep has been lost, and I’m tired of expending my limited energy on it, but there it is.
Physically, changes have been happening to my body for years. I remember the first time that fact really hit me, like roundhouse to the face kind of hit me. I was looking through photos from when Nora was almost one and Grace creeping up on three years old. We were at the pumpkin farm on a sunny day in October. The visit to choose the perfect pumpkins for beautifully imperfect jack o’ lanterns was fun, and the photos are great. I lingered on a photo of me holding Grace in the pumpkin patch. The very first thing I thought as I stared at the photo of myself was, “I remember her.” A profound sadness washed over me. Then all the feels all at once — I felt a boot kick to the pit of my stomach. I felt an odd sort of panic, a need to scramble and catch her, and goddammit hold on tighter this time. I felt angry because I didn’t appreciate her enough when she was here. I felt like someone should mourn her, at least for a minute or two. I decided to take those minutes, and maybe a few more. Then I quietly realized that … I miss her. I wondered if Augie missed her too. Then something bigger hit me. A feeling I can’t yet describe properly. A crushing, cruel feeling sat down on my fucking chest.
The girls will never know her.
They were so young. She was gone before their memories could really take hold of her. More than anything, that was the single most heartbreaking realization I had that day. Maybe ever. I wept. I sat on the floor of my closet so no one would hear me, and I wept. How badly I wanted them to know her. How badly I wanted them to love her. How terribly much I wanted her back.
I catch glimpses of her now and then, and in those moments I try to get her to stay. I tell stories about her. I cling to my memories of her. I secretly wait for her to come back. I play the part of Her for as long as I can, until she’s tucked away in the crushing grip of an angry, crowded, damaged brain, or whisked from my sight in the unforgivable throes of an electrical storm.
She left with stories untold, things undone. Her departure, not all at once, was subtle enough not to stir my concern until she was far enough gone that I couldn’t reach her. I convince myself that if I had noticed the small stuff, I’d have held her more tightly. I’d have chronicled her days with the most perfect words. I’d have written her lines so you could hear her laughter between the syllables. I’d have kept her safe from the storm.
The Sara I am has so much more to do that I can’t waste time lamenting over the Sara I lost. The Sara I am feels like less-than, but I’m trying, every fucking day, to see her as different-than instead. I am trying to be kind to Her. I am trying to be patient with Her. The last time I spoke on stage I did so without Her, and it was miserably apparent. Something that had once been a labor of love lost all the love. I haven’t taken the stage since. Over the last year, molehills have grown into mountains, and I’ve lost my footing time and again. So, I let more old loves go. I set out to conquer the flatlands, instead. I pretended it would be enough. Realizing that it is becoming significantly more challenging to write snapped me back from a comfortable haze of “fuck it, I’ll take the road already taken” complacency. It’s not enough. So, I’m diverging again. If it’s getting harder to write, then I will just write more. When I can’t find Her anywhere, I will just search harder, listen for Her more carefully, reach my hand out further, but more than anything, believe that the Sara who is different-than is worthy enough to walk in Her stead while She is gone. I might even acquire more hardware if it means it will guide Her back to me when she can’t see her way through the storm.
In September I will take the stage again. This time to tell our story, Her’s and mine. It might be a disaster, or it might be the talk of my lifetime. It doesn’t really matter which. What matters now is that I do it, that I keep telling stories. Whether I think I still have the chops to tell them “just right”, or I can only manage to puke the words out for someone to try to piece into something coherent, I have to tell them. Fancy robot parts or not, if I stop trying, if I stop telling stories altogether, she’ll never have a beacon to follow. If I surrender our voice, she may never return at all. I don’t know how it will all shake out, but I’ll tell you more about it soon. Perhaps you will join me on that day, and whether it’s a beautiful summit, or a glorious disaster, at the very least, it’ll be one more story to tell.
I’ll eat you up, I love you so.
The company that manufactures the vagus nerve implant has the word cyber in its name. This kind of “wearable tech” ain’t for pussies, so it just might have a home in Sara 2.0. Booyah. (Original SkyNet Matriarch, FTMFW.)
Stay tuned, turkeys. There are (many) more stories to come.